Jamie Heywood: The big idea my brother inspired

45,812 views ・ 2010-02-02

TED


Please double-click on the English subtitles below to play the video.

Prevodilac: Tatjana Jevdjic Lektor: Silvija Varga
00:15
When my brother called me in December of 1998,
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Kada me je brat u decembru 1998. nazvao,
00:18
he said, "The news does not look good."
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rekao je: “Vesti nisu dobre.”
00:20
This is him on the screen.
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Ovo je on na ekranu.
00:22
He'd just been diagnosed with ALS,
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Upravo su mu postavili dijagnozu ALS-a,
00:24
which is a disease that the average lifespan is three years.
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bolesti kod koje je prosečno preživljavanje tri godine.
00:28
It paralyzes you. It starts by killing
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Ona vas parališe. Počinje uništavanjem
00:30
the motor neurons in your spinal cord.
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motornih neurona u vašoj kičmenoj moždini.
00:33
And you go from being a healthy,
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I vi od zdravog,
00:35
robust 29-year-old male
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snažnog 29-godišnjeg muškarca postanete
00:38
to someone that cannot breathe,
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neko ko ne može da diše,
00:40
cannot move, cannot speak.
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ne može da se kreće, ne može da govori.
00:46
This has actually been, to me, a gift,
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Ovo je, u stvari, za mene bio poklon,
00:50
because we began a journey
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krenuli smo na put na kojem ćemo
00:53
to learn a new way of thinking about life.
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naučiti da o životu razmišljamo na nov način.
00:56
And even though Steven passed away three years ago
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Iako je Stiven preminuo pre tri godine,
01:00
we had an amazing journey as a family.
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kao porodica smo prešli neverovatan put.
01:02
We did not even --
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Nije samo da smo
01:05
I think adversity is not even the right word.
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imali poteškoće, to nije dovoljno reći.
01:07
We looked at this and we said, "We're going to do something with this
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Gledali smo na to kao na nešto što
01:10
in an incredibly positive way."
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ćemo iskoristiti na pozitivan način.
01:12
And I want to talk today
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Danas želim da govorim
01:14
about one of the things that we decided to do,
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o jednoj od stvari koju smo odlučili da uradimo,
01:17
which was to think about a new way of approaching healthcare.
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a to je da osmislimo nov pristup zdravstvenom sistemu.
01:21
Because, as we all know here today,
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Budući da, kao što svi znamo,
01:23
it doesn't work very well.
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on ne funkcioniše dobro.
01:25
I want to talk about it in the context of a story.
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O tome želim da govorim u kontekstu priče.
01:28
This is the story of my brother.
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Ovo je priča mog brata.
01:30
But it's just a story. And I want to go beyond the story,
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Ali, to je samo priča. Želim da odem iza te priče
01:33
and go to something more.
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u nešto veće.
01:35
"Given my status, what is the best outcome
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"Imajući u vidu moje stanje, koji je najbolji ishod
01:38
I can hope to achieve, and how do I get there?"
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kojem mogu da se nadam i kako da ga postignem?"
01:41
is what we are here to do in medicine, is what everyone should do.
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To je ono što se radi u medicini, što svi treba da radimo.
01:44
And those questions all have variables to them.
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Sva ta pitanja imaju svoje promenljive.
01:46
All of our statuses are different.
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Svako od nas ima različit status.
01:48
All of our hopes and dreams, what we want to accomplish,
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Sve naše nade i snovi, ono što želimo da postignemo
01:50
is different, and our paths will be different,
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je drugačije i naši putevi će biti različiti,
01:52
they are all stories.
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sve su to priče.
01:54
But it's a story until we convert it to data
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Ali to ostaje priča dok je ne pretvorimo u podatke,
01:56
and so what we do, this concept we had,
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i ono što radimo, ideja koju smo imali je
01:58
was to take Steven's status, "What is my status?"
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da pođemo od Stivenovog stanja: “Kakvo je moje stanje?”,
02:01
and go from this concept of walking, breathing,
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da krenemo od koncepta hodanja, disanja,
02:06
and then his hands, speak,
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zatim upotrebe šaka i govora
02:09
and ultimately happiness and function.
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i konačno do njegovog zadovoljstva i smisla života.
02:13
So, the first set of pathologies, they end up in the stick man
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Dakle, krenemo od slabosti, one se postave na ovaj crtež,
02:15
on his icon,
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na njegovu ikonicu,
02:17
but the rest of them are really what's important here.
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ali sve ostalo je ono što je ovde zaista bitno.
02:20
Because Steven, despite the fact that he was paralyzed,
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Jer Stiven je, i pored toga što je bio paralizovan
02:23
as he was in that pool, he could not walk,
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kao što je u ovom bazenu, kada nije mogao da hoda
02:26
he could not use his arms -- that's why he had the little floaty things on them,
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ili da koristi svoje ruke -- zbog čega ima ove male plutajuće stvari na njima,
02:28
did you see those? --
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da li ste ih videli? --
02:30
he was happy. We were at the beach,
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bio srećan. Bili smo na plaži,
02:32
he was raising his son, and he was productive.
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odgajao je svog sina, stvarao je.
02:34
And we took this, and we converted it into data.
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To smo uzeli i pretvorili u podatak.
02:39
But it's not a data point at that one moment in time.
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Ali to nije jedan podatak u jednom trenutku.
02:41
It is a data point of Steven in a context.
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To je podatak o Stivenu vezan za kontekst.
02:43
Here he is in the pool. But here he is healthy,
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Ovde je u bazenu. Ali ovde je zdrav,
02:45
as a builder: taller, stronger,
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kao preduzimač: viši, snažniji,
02:48
got all the women, amazing guy.
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dobijao je sve žene, neverovatan momak.
02:50
Here he is walking down the aisle,
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Ovde ide prema oltaru,
02:52
but he can barely walk now, so it's impaired.
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ali sada jedva hoda, znači postoji slabost.
02:55
And he could still hold his wife's hand, but he couldn't do buttons on his clothes,
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I dalje je mogao da drži svoju ženu za ruku, ali nije mogao da se zakopča,
02:57
can't feed himself.
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nije mogao sam da jede.
02:59
And here he is, paralyzed completely,
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Evo ga ovde, potpuno oduzet,
03:01
unable to breathe and move, over this time journey.
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nesposoban da diše i da se kreće, u ovom vremenskom pregledu.
03:03
These stories of his life, converted to data.
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Ove priče njegovog života su pretvorene u podatke.
03:06
He renovated my carriage house
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Renovirao je moju zgradu za kočije
03:08
when he was completely paralyzed, and unable to speak,
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dok je bio potpuno paralizovan, nije mogao da govori,
03:10
and unable to breathe, and he won an award for a historic restoration.
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ni da diše, a osvojio je nagradu za istorijsku restauraciju.
03:16
So, here's Steven alone, sharing this story in the world.
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Ovde je Stiven sam, nesebično deleći svoju priču sa drugima.
03:18
And this is the insight, the thing that we are
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A ovo je sagledavanje zbog kojeg
03:21
excited about,
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smo uzbuđeni,
03:23
because we have gone away from the community that we are,
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jer smo se udaljili od zajednice kakva jesmo,
03:26
the fact that we really do love each other and want to care for each other.
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od toga da zaista volimo jedni druge i želimo da brinemo jedni o drugima.
03:29
We need to give to others to be successful.
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Moramo davati drugima da bismo bili uspešni.
03:31
So, Steven is sharing this story,
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Tako Stiven učestvuje sa svojom pričom,
03:34
but he is not alone.
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ali nije usamljen.
03:36
There are so many other people sharing their stories.
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Postoje mnogi drugi ljudi koji dele svoje priče.
03:38
Not stories in words, but stories in data and words.
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Ne priče u rečima, nego priče u podacima i rečima.
03:41
And we convert that information into this structure,
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Tu informaciju pretvaramo u ovu strukturu,
03:44
this understanding, this ability to convert
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ovo razumevanje, ovo svojstvo pretvaranja
03:47
those stories into something that is computable,
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njihovih priča u nešto merljivo,
03:49
to which we can begin to change the way
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u nešto čime možemo da započnemo promenu načina
03:51
medicine is done and delivered.
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kako se lečenje izvodi i sprovodi.
03:53
We did this for ALS. We can do this for depression,
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Uradili smo to za ALS. Isto možemo uraditi za depresiju,
03:55
Parkinson's disease, HIV.
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Parkinsonovu bolest, HIV.
03:57
These are not simple, they are not internet scalable;
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Ove konverzije nisu jednostavne, ne mogu se meriti na internetu;
03:59
they require thought and processes
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one zahtevaju razmišljanje i postupke
04:01
to find the meaningful information about the disease.
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da bi se pronašla značajna informacija o ovim bolestima.
04:04
So, this is what it looks like when you go to the website.
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Ovako izgleda kad odete na sajt.
04:07
And I'm going to show you what Patients Like Me,
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Pokazaću vam šta je “Patients Like Me”,
04:10
the company that myself, my youngest brother
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kompanija koju sam osnovao sa najmlađim bratom
04:12
and a good friend from MIT started.
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i dobrim prijateljem sa Instituta za tehnologiju Masačusetsa.
04:14
Here are the actual patients, there are 45,000 of them now,
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Ovde su stvarni pacijenti, sada ih ima oko 45 000
04:17
sharing their stories as data.
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i oni učestvuju sa svojim pričama koje su pretvorene u podatke.
04:19
Here is an M.S. patient.
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Ovde je pacijent oboleo od MS-a (multiple skleroze).
04:21
His name is Mike, and he is uniformly impaired
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Zove se Majk i ima podjednako oštećene
04:23
on cognition, vision, walking, sensation.
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kogniciju, vid, hod, senzibilitet.
04:26
Those are things that are different for each M.S. patient.
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To je različito za svakog obolelog od MS-a.
04:28
Each of them can have a different characteristic.
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Svaki od njih može da ima različite osobine.
04:30
You can see fibromyalgia, HIV, ALS, depression.
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Možete videti fibromialgiju, HIV, ALS, depresiju.
04:35
Look at this HIV patient down here, Zinny.
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Pogledajte ovog obolelog od HIV-a, Zini.
04:38
It's two years of this disease. All of the symptoms are not there.
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Ovo je druga godina trajanja bolesti. Još nema sve simptome.
04:41
But he is working to keep his CD4 count high
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Ali radi na tome da održi visoke vrednosti CD4
04:43
and his viral level low so he can make his life better.
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i titar virusa niskim, da bi mogao da živi bolje.
04:46
But you can aggregate this and you can discover things about treatments.
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Ali ovo možete da objedinite i otkrijete ponešto o lečenjima.
04:50
Look at this, 2,000 people almost, on Copaxone.
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Pogledajte ovo, skoro 2 000 obolelih uzima Kopakson.
04:52
These are patients currently on drugs,
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Ovo su pacijenti koji su sada na lekovima
04:54
sharing data.
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i dele podatke.
04:56
I love some of these, physical exercise, prayer.
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Volim neke od ovih, fizičko vežbanje, molitva.
04:59
Anyone want to run a comparative effectiveness study
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Da li neko želi da radi komparativnu studiju efikasnosti
05:01
on prayer against something? Let's look at prayer.
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molitve u odnosu na nešto drugo? Pogledajmo molitvu.
05:03
What I love about this, just sort of interesting design problems.
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Ono što volim u vezi s ovim, samo izmislite kao zanimljive probleme.
05:07
These are why people pray.
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Ovo su razlozi zašto se ljudi mole.
05:09
Here is the schedule of how frequently they -- it's a dose.
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Ovde je raspored koliko se često mole -- to je doza.
05:11
So, anyone want to see the 32 patients that pray for 60 minutes a day,
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Da li neko želi da vidi da li se ova 32 pacijenta,
05:14
and see if they're doing better, they probably are.
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koji se mole 60 minuta dnevno, osećaju bolje, verovatno da.
05:16
Here they are. It's an open network,
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Evo ih ovde. To je otvorena mreža,
05:19
everybody is sharing. We can see it all.
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svako učestvuje sa podacima. Možemo sve da vidimo.
05:22
Or, I want to look at anxiety, because people are praying for anxiety.
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Ili želim da proučavam anksioznost, jer ljudi se mole zbog anksioznosti.
05:25
And here is data on 15,000 people's current anxiety, right now.
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Ovde su podaci o trenutnoj anksioznosti 15 000 ljudi.
05:30
How they treat it,
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Kako je leče,
05:33
the drugs, the components of it,
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kojim lekovima, kojim sastojcima,
05:36
their side effects, all of it in a rich environment,
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njihovi neželjeni efekti, sve to u različitim životnim prilikama,
05:39
and you can drill down and see the individuals.
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koje možete proučavati do pojedinaca.
05:41
This amazing data allows us to drill down and see
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Ovi neverovatni podaci vam dozvoljavaju da dođete
05:44
what this drug is for --
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do upotrebe ovog leka --
05:47
1,500 people on this drug, I think. Yes.
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mislim da je 1 500 ljudi na ovom leku. Da.
05:49
I want to talk to the 58 patients down here
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Želim da razgovaram sa ovih 58 pacijenata
05:51
who are taking four milligrams a day.
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koji uzimaju četiri miligrama dnevno.
05:53
And I want to talk to the ones of those that have been doing
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Želim da razgovaram samo sa onima koji uzimaju tu dozu
05:55
it for more than two years.
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duže od dve godine.
06:01
So, you can see the duration.
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Prema tome, možete videti trajanje.
06:03
All open, all available.
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Sve je otvoreno, sve je dostupno.
06:07
I'm going to log in.
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Sada ću se ulogovati.
06:11
And this is my brother's profile.
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Ovo je profil mog brata.
06:13
And this is a new version of our platform we're launching right now.
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Ovo je nova verzija naše platforme koju upravo sada puštamo.
06:17
This is the second generation. It's going to be in Flash.
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To je druga generacija. Biće u Flashu.
06:19
And you can see here, as this animates over,
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Ovde možete videti, preko ovih animacija,
06:22
Steven's actual data against the background of all other patients,
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Stivenove stvarne podatke nasuprot pozadine koju čine svi drugi pacijenti,
06:25
against this information.
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u poređenju sa tom informacijom.
06:28
The blue band is the 50th percentile. Steven is the 75th percentile,
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Plava traka je 50 posto. Stiven je na 75 posto,
06:30
that he has non-genetic ALS.
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pošto ima negenetski ALS.
06:33
You scroll down in this profile and you can see
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Pregledajući taj profil možete da vidite
06:35
all of his prescription drugs,
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sve njegove prepisane lekove,
06:37
but more than that, in the new version, I can look at this interactively.
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ali više od toga, u ovoj novoj verziji, mogu da pregledam interaktivno.
06:40
Wait, poor spinal capacity.
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Sačekajte, slabost leđa.
06:42
Doesn't this remind you of a great stock program?
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Zar vas ovo ne podseća na veliki program akcija?
06:44
Wouldn't it be great if the technology we used to take care of ourselves
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Zar ne bi bilo sjajno kada bi tehnologija, koju koristimo za brigu o sebi,
06:46
was as good as the technology we use to make money?
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bila jednako dobra kao i tehnologija koju koristimo da zaradimo novac?
06:49
Detrol. In the side effects for his drug,
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Detrol. Među neželjenim efektima njegovih lekova,
06:51
integrated into that, the stem cell transplant that he had,
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integrisana u njih, je transplantacija matičnih ćelija koju je imao
06:53
the first in the world, shared openly for anyone who wants to see it.
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prvi u svetu, razmenjena otvoreno za svakog ko želi da je vidi.
06:59
I love here -- the cyberkinetics implant,
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Sviđa mi se ovo -- kibernetička proteza,
07:01
which was, again, the only patient's data that was online and available.
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što je, ponovo, bio jedini podatak o pacijentu, onlajn i dostupan.
07:05
You can adjust the time scale. You can adjust the symptoms.
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Možete podesiti vremensku skalu. Možete podesiti simptome.
07:07
You can look at the interaction between how I treat my ALS.
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Možete da vidite interakciju između mojih lekova za ALS.
07:11
So, you click down on the ALS tab there.
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Mogu da pritisnem ovaj ALS tab.
07:13
I'm taking three drugs to manage it. Some of them are experimental.
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Uzimam tri leka da bih se lečio. Neki od njih su eksperimentalni.
07:16
I can look at my constipation, how to manage it.
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Mogu da vidim moju opstipaciju i kako da je rešavam.
07:18
I can see magnesium citrate, and the side effects
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Mogu da vidim magenzijum citrat, neželjene efekte
07:20
from that drug all integrated in the time
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tog leka koji su integrisani u
07:22
in which they're meaningful.
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značajnom vremenu.
07:25
But I want more.
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Ali želim više.
07:27
I don't want to just look at this cool device, I want to take this
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Ne želim samo da gledam u ovaj sjajan izum, želim od ovog
07:29
data and make something even better.
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podatka da napravim nešto još bolje.
07:31
I want my brother's center of the universe and his symptoms
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Želim da centar sveta mog brata, njegove simptome
07:34
and his drugs,
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njegove lekove
07:37
and all of the things that interact among those,
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i sve te stvari koje deluju jedna na drugu,
07:39
the side effects, to be in this beautiful data galaxy
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neželjene efekte, stavim u ovo divno sazvežđe podataka,
07:42
that we can look at in any way we want to understand it,
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koje možemo da proučavamo na koji god želimo način da bi ga razumeli,
07:45
so that we can take this information
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tako da sa ovom informacijom možemo
07:48
and go beyond just this simple model
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da odemo dalje od ovog jednostavnog modela,
07:52
of what a record is.
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medicinskog kartona.
07:55
I don't even know what a medical record is.
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Čak i ne znam šta je medicinski karton.
07:57
I want to solve a problem. I want an application.
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Želim da rešim problem, želim aplikaciju.
07:59
So, can I take this data -- rearrange yourself,
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Dakle, mogu li ovi podaci -- nakon što se sortiraju,
08:02
put the symptoms in the left, the drugs across the top,
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simptomi stave levo, lekovi prekoputa na vrh,
08:04
tell me everything we know about Steven and everyone else,
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da mi kažu sve što znamo o Stivenu i svakom drugom
08:06
and what interacts.
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i šta je međusobno zavisno.
08:09
Years after he's had these drugs,
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Godinama nakon što je uzimao ove lekove,
08:11
I learned that everything he did to manage his excess saliva,
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naučio sam sve što je činio da bi se rešio preterane salivacije,
08:14
including some positive side effects that came from other drugs,
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uključujući korisne propratne efekte nekih drugih lekova,
08:17
were making his constipation worse.
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što je pogoršavalo opstipaciju.
08:19
And if anyone's ever had severe constipation,
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Ukoliko ste bilo kad imali tešku opstipaciju
08:21
and you don't understand how much of an impact that has on your life --
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onda razumete koliko to mnogo utiče na vaš život --
08:23
yes, that was a pun.
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da, to je bila igra reči.
08:26
You're trying to manage these,
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Pokušavate to da rešite,
08:28
and this grid is available here,
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a ovde je mreža
08:30
and we want to understand it.
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koju želimo da razumemo.
08:33
No one's ever had this kind of information.
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Niko do sad nije imao tu vrstu informacije.
08:36
So, patients have this. We're for patients.
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Pacijenti je sad imaju. Mi smo za pacijente.
08:38
This is all about patient health care, there was no doctors on our network.
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Sve ovo se tiče brige o pacijentu, nije bilo lekara u našoj mreži.
08:40
This is about the patients.
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Ovo se odnosi na pacijenate.
08:42
So, how can we take this and bring them a tool
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Kako možemo od ovoga da stvorimo sredstvo kojim
08:45
that they can go back and they can engage the medical system?
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oboleli mogu da se vrate i uključe u medicinski sistem?
08:47
And we worked hard, and we thought about it and we said,
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Naporno smo radili i razmišljali o tome i rekli:
08:50
"What's something we can use all the time,
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“Šta je to što možemo da koristimo sve vreme,
08:52
that we can use in the medical care system,
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što možemo da upotrebimo u sistemu zdravstvene zaštite,
08:54
that everyone will understand?"
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a svi će razumeti?”
08:56
So, the patients print it out,
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Pacijenti su to odštampali,
08:58
because hospitals usually block us
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zato što nas bolnice obično blokiraju
09:00
because they believe we are a social network.
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misleći da smo društvena mreža.
09:03
It's actually the most used feature on the website.
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To je u stvari najviše korišćena osobina ovog sajta.
09:05
Doctors actually love this sheet, and they're actually really engaged.
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Lekari zapravo vole ovu stranicu i veoma su uključeni.
09:08
So, we went from this story of Steven
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Počeli smo od ove priče o Stivenu,
09:11
and his history to data, and then back to paper,
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od njegove istorije do podataka, a zatim nazad na papir,
09:14
where we went back and engaged the medical care system.
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gde smo ponovo uključili zdravstveni sistem.
09:15
And here's another paper.
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Ovde je još jedan članak.
09:17
This is a journal, PNAS --
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Ovo je časopis, PNAS --
09:19
I think it's the Proceedings of the National Academy of Science
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mislim da je Zbornik nacionalne akademije nauka
09:21
of the United States of America.
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SAD-a.
09:23
You've seen multiple of these today, when everyone's bragging about
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Danas ste videli dosta ovakvih, gde se svako hvali
09:25
the amazing things they've done.
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neverovatnim stvarima koje su uradili.
09:27
This is a report about a drug called lithium.
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Ovo je izveštaj o leku koji se zove litijum.
09:29
Lithium, that is a drug used to treat bipolar disorder,
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Litijum se koristi za lečenje bipolarnog poremećaja,
09:33
that a group in Italy found
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a italijanski tim je pronašao,
09:35
slowed ALS down in 16 patients, and published it.
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u grupi od 16 pacijenata, da usporava ALS i to su objavili.
09:38
Now, we'll skip the critiques of the paper.
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Za sada ćemo zanemariti sve kritike ovog rada.
09:40
But the short story is: If you're a patient,
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Ali, ukratko: ako ste pacijent
09:42
you want to be on the blue line.
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želite da budete na plavoj liniji.
09:44
You don't want to be on the red line, you want to be on the blue line.
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Ne želite da budete na crvenoj liniji, želite da budete na plavoj.
09:46
Because the blue line is a better line. The red line
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Zato što je plava linija bolja. Crvena je
09:48
is way downhill, the blue line is a good line.
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put naniže, plava linija je dobra linija.
09:50
So, you know we said -- we looked at this, and what I love also
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Znate, rekli smo -- mi smo ovo proučili, a takođe volim
09:54
is that people always accuse these Internet sites
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to što ljudi stalno optužuju ove Internet sajtove
09:56
of promoting bad medicine and having people do things irresponsibly.
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da podstiču loše lečenje i čine da ljudi neodgovorno rade stvari.
09:59
So, this is what happened when PNAS published this.
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Isto se dogodilo i kad je PNAS ovo objavio.
10:02
Ten percent of the people in our system took lithium.
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Deset posto ljudi u našem sistemu je počelo da uzima litijum.
10:05
Ten percent of the patients started taking lithium based on 16 patients of data
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Počeli su da uzimaju litijum na osnovu podataka dobijenih na 16 pacijenata
10:08
in a bad publication.
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u lošem članku.
10:10
And they call the Internet irresponsible.
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I oni kažu da je Internet neodogovoran.
10:12
Here's the implication of what happens.
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Ovde je nagoveštaj onog što se desilo.
10:14
There's this one guy, named Humberto, from Brazil,
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Ovde je jedan momak, zove se Umberto, iz Brazila
10:17
who unfortunately passed away nine months ago,
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koji je, nažalost, preminuo pre devet meseci,
10:20
who said, "Hey, listen. Can you help us answer this question?
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koji je pitao: “Slušajte. Možete li nam pomoći da odgovorimo na pitanje?
10:22
Because I don't want to wait for the next trial, it's going to be years.
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Ne želim da čekam na sledeće ispitivanje, proći će godine.
10:25
I want to know now. Can you help us?"
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Želim da znam sada. Možete li da nam pomognete?”
10:27
So, we launched some tools, we let them track their blood levels.
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Tako smo izbacili neke alate, dozvolili smo im da prate nivoe u krvi.
10:30
We let them share the data and exchange it.
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Dozvolili smo im da razmenjuju i dele ove podatke.
10:32
You know, a data network.
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Znate, mreža podataka.
10:35
And they said, you know, "Jamie, PLM,
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Oni su tražili: “Džejmi, da li vi,
10:37
can you guys tell us whether this works or not?"
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momci iz PLM-a, možete da nam kažete da li je efikasan ili ne?”
10:39
And we went around and we talked to people,
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Raspitivali smo se, razgovarali sa ljudima
10:41
and they said, "You can't run a clinical trial like this. You know?
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i odgovorili su nam: “Ne možete tako voditi kliničko ispitivanje. Znate?
10:43
You don't have the blinding, you don't have data,
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Nemate slepu studiju, nemate podatke,
10:45
it doesn't follow the scientific method.
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ne pratite naučni metod.
10:47
It's never going to work. You can't do it."
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To tako nikad neće funkcionisati. Ne možete to da uradite.”
10:49
So, I said, "Okay well we can't do that. Then we can do something harder."
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Rekao sam: “OK, ne možemo to da uradimo. Onda možemo nešto teže.”
10:52
(Laughter)
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(Smeh)
10:55
I can't say whether lithium works in all ALS patients,
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Ne mogu da kažem da li je litijum efikasan kod svih obolelih od ALS-a,
10:57
but I can say whether it works in Humberto.
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ali mogu da kažem da li je efikasan za Umberta.
11:00
I bought a Mac about two years ago, I converted over,
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Kupio sam Mac pre oko dve godine, preobratio sam se,
11:02
and I was so excited about this new feature of the time machine
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bio sam veoma zainteresovan za ovu novu osobinu vremenskog alata
11:04
that came in Leopard. And we said -- because it's really cool,
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koja je došla sa Leopardom. Rekli smo -- jer je veoma dobra,
11:06
you can go back and you can look at the entire history of your computer,
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možete da odete u prošlost, pregledate svu istoriju vašeg kompjutera
11:08
and find everything you've lost, and I loved it.
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i pronađete sve što ste izgubili, to sam obožavao.
11:10
And I said, "What if we built a time machine for patients,
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Rekao sam: “Šta ako napravimo vremenski alat za pacijente,
11:14
except instead of going backwards, we go forwards.
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ali umesto da idemo u prošlost, idemo u budućnost.
11:17
Can we find out what's going to happen to you,
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Možemo li da otkrijemo šta će se tebi dogoditi,
11:20
so that you can maybe change it?"
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tako da bi to možda mogao da promeniš?”
11:23
So, we did. We took all the patients like Humberto,
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To smo i uradili. Uzeli smo sve pacijente koji su kao Umberto,
11:26
That's the Apple background, we stole that because we didn't have time
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to je Apple-ova pozadina, ukrali smo je jer nismo imali vremena
11:28
to build our own. This is a real app by the way.
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da napravimo našu. Uzgred rečeno, ovo je stvarna aplikacija.
11:30
This is not just graphics.
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Ovo nije samo grafika.
11:32
And you take those data, and we find the patients like him, and we bring
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Uzmete te podatke, pronađete pacijente kao on i sakupite
11:34
their data together. And we bring their histories into it.
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njihove podatke. Donesemo njihove istorije u to.
11:38
And then we say, "Well how do we line them all up?"
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Zatim kažemo: “Dobro, kako da ih obradimo?”
11:40
So, we line them all up so they go together
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Sve smo ih grupisali tako da su usaglašeni
11:42
around the meaningful points,
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oko značajnih tačaka,
11:44
integrated across everything we know about the patient.
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integrisani kroz sve podatke koje znamo o pacijentu.
11:46
Full information, the entire course of their disease.
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Potpuna informacija, kao što je celokupni tok njihove bolesti.
11:50
And that's what is going to happen to Humberto,
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To će se dogoditi Umbertu
11:52
unless he does something.
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ukoliko ništa ne preduzme.
11:54
And he took lithium, and he went down the line.
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Uzeo je litijum i nastavio da se pogoršava.
11:57
And it works almost every time.
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Ovo važi skoro za svakog pacijenta.
12:00
Now, the ones that it doesn't work are interesting.
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Sada, interesantni su oboleli koji su izuzetak.
12:02
But almost all the time it works.
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Ali skoro uvek može da se primeni.
12:05
It's actually scary. It's beautiful.
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To je zapravo zastrašujuće. To je divno.
12:07
So, we couldn't run a clinical trial, we couldn't figure it out.
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Dakle, nismo mogli da radimo kliničko ispitivanje niti da ga protumačimo.
12:09
But we could see whether it was going to work for Humberto.
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Ali mogli smo da vidimo da li će biti efkasno za Umberta.
12:12
And yeah, all the clinicians in the audience will talk about power
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Svi kliničari u publici će govoriti o snazi ispitvanja
12:14
and all the standard deviation. We'll do that later.
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i o standardnim devijacijama. O tome ćemo posle.
12:16
But here is the answer
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Ali tu je odgovor u obliku
12:20
of the mean of the patients that actually decided
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proseka pacijenata koji su zaista odlučili
12:22
to take lithium.
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da uzmu litijum.
12:24
These are all the patients that started lithium.
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Ovo su svi pacijenti koji su počeli da uzimaju litijum.
12:26
It's the Intent to Treat Curve.
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To je kriva namere za lečenje.
12:28
You can see here, the blue dots on the top, the light ones,
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Ovde možete videti, ove svetle plave tačke na vrhu,
12:32
those are the people in the study in PNAS
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to su ljudi u studiji u PNAS-a,
12:34
that you wanted to be on. And the red ones are the ones,
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u toj grupi tačaka želite da budete. A crvene,
12:36
the pink ones on the bottom are the ones you didn't want to be.
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ružičaste ovde na dnu, su one gde ne želite da budete.
12:38
And the ones in the middle are all of our patients
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A ove u sredini su svi naši pacijenti
12:41
from the start of lithium at time zero,
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koji su počeli sa litijumom u nultom vremenu,
12:43
going forward, and then going backward.
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idući unapred, a zatim unazad.
12:47
So, you can see we matched them perfectly, perfectly.
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Vidite da smo ih savršeno usaglasili, savršeno.
12:50
Terrifyingly accurate matching.
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Zastrašujući savršeno usaglašavanje.
12:52
And going forward, you actually don't want to be a lithium patient this time.
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Gledajući unapred, ovaj put stvarno ne želite da uzimate litijum.
12:56
You're actually doing slightly worse -- not significantly,
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Zaista vam je nešto lošije -- ne značajno,
12:58
but slightly worse. You don't want to be a lithium patient this time.
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ali malo lošije. Ovaj put ne želite da uzimate litijum.
13:01
But you know, a lot of people dropped out,
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Ali znate, dosta ljudi je odustalo,
13:04
the trial, there is too much drop out.
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mislim od ispitivanja, previše je odustalo.
13:06
Can we do the even harder thing? Can we go to the patients
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Možemo li da uradimo nešto još teže? Da nađemo pacijente
13:08
that actually decided to stay on lithium,
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koji su stvarno odlučili da ostanu na litijumu
13:12
because they were so convinced they were getting better?
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jer su bili veoma uvereni da će im biti bolje?
13:14
We asked our control algorithm,
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Pitali smo naš kontrolni algoritam
13:16
are those 69 patients -- by the way, you'll notice
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za tih 69 pacijenata -- uzgred, primetićete
13:18
that's four times the number of patients in the clinical trial --
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da je to četiri puta više pacijenata nego u kliničkoj studiji --
13:21
can we look at those patients and say,
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možemo li da gledamo u te pacijente i da odgovorimo:
13:24
"Can we match them with our time machine
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“Možemo li našim vremenskim alatom da ih uporedimo
13:27
to the other patients that are just like them,
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sa drugim, njima sličnim, pacijentima
13:29
and what happens?"
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i šta se tada događa?”
13:31
Even the ones that believed they were getting better
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Čak i oni koji su verovali da se oporavljaju
13:34
matched the controls exactly. Exactly.
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su tačno usaglašeni sa kontrolama. U potpunosti.
13:37
Those little lines? That's the power.
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Ove male linije? To je snaga.
13:39
So, we -- I can't tell you lithium doesn't work. I can't tell you
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Mogu da vam kažem da litijum ne deluje. Mogu da vam kažem
13:41
that if you did it at a higher dose
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da ako ga uzimate u većim dozama
13:43
or if you run the study proper -- I can tell you
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ili ako radite potpunu studiju -- mogu da vam kažem
13:45
that for those 69 people that took lithium,
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da tih 69 pacijenata koji su uzimali litijum
13:49
they didn't do any better than the people that were just like them,
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nisu bili ništa bolje nego njima slični pacijenti,
13:51
just like me,
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meni slični pacijenti,
13:53
and that we had the power to detect that at about
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a imali smo moć da ovo otkrijemo u
13:56
a quarter of the strengths reported in the initial study.
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četvrtini jačina saopštenih u inicijalnoj studiji.
13:59
We did that one year ahead of the time
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To smo uradili godinu dana pre
14:02
when the first clinical trial funded by the NIH
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nego što je prvo kliničko ispitivanje, Nacionalni institut za zdravlje ga je finansirao
14:04
for millions of dollars failed for futility last week,
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milionima dolara, prošle nedelje proglašeno
14:07
and announced it.
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neuspešnim zbog uzaludnosti.
14:10
So, remember I told you about my brother's stem cell transplant.
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Setite se, govorio sam vam o transplantaciji matičnih ćelija mog brata.
14:13
I never really knew whether it worked.
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Nikad nisam saznao da li je to delovalo.
14:16
And I put 100 million cells in his cisterna magna,
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Stavio sam 100 miliona ćelija u veliku cisternu
14:19
in his lumbar cord,
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njegove kičmene moždine,
14:21
and filled out the IRBs and did all this work,
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popunio sve te formulare i sve to uradio,
14:23
and I never really knew.
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a da nikad nisam saznao istinu.
14:26
How did I not know?
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Kako sam mogao da ne znam?
14:28
I mean, I didn't know what was going to happen to him.
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Mislim, nisam znao šta će se njemu desiti,
14:30
I actually asked Tim, who is the quant in our group --
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pitao sam Tima koji je matematičar u našoj grupi --
14:33
we actually searched for about a year to find someone
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oko godinu dana smo tražili nekoga
14:36
who could do the sort of math and statistics and modeling
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ko bi mogao da uradi tu vrstu matematike, statistike i modeliranja
14:38
in healthcare, couldn't find anybody. So, we went to the finance industry.
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u zdravstvu, nismo nikog mogli da nađemo. Prešli smo na finansijski sistem.
14:41
And there are these guys who used to model the future
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Tamo su bili ovi momci koji su modelirali kretanje
14:43
of interest rates, and all that kind of stuff.
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kamatnih stopa i tome slično.
14:45
And some of them were available. So, we hired one.
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Neki od njih su bili slobodni. Jednog smo angažovali.
14:48
(Laughter)
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(Smeh)
14:51
We hired them, set them up, assisting at lab.
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Angaživali smo ih, postavili ih kao laboratorijske asistente.
14:53
I I.M. him things. That's the way I communicate with him,
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Slao sam mu instant poruke. To je način komunikacije sa njim,
14:55
is like a little guy in a box. I I.M.ed Tim. I said,
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kao mali dečak u kutiji. Rekao sam:
14:57
"Tim can you tell me whether my brother's stem cell transplant
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“Time, možeš li da mi ogovoriš da li je transplantacija matičnih ćelija
14:59
worked or not?"
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kod mog brata bila uspešna ili ne?”
15:02
And he sent me this two days ago.
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Ovo mi je poslao pre dva dana.
15:05
It was that little outliers there. You see that guy that lived a long time?
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To su bila ova mala odstupanja. Vidite ovog čoveka koji je dugo živeo?
15:08
We have to go talk to him. Because I'd like to know what happened.
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Moramo da razgovaramo sa njim. Jer bih želeo da znam šta se dogodilo.
15:10
Because something went different.
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Nešto je bilo drugačije.
15:12
But my brother didn't. My brother went straight down the line.
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Moj brat nije dugo živeo. Išao je pravo naniže.
15:15
It only works about 12 months.
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Predviđanje važi samo oko 12 meseci.
15:17
It's the first version of the time machine.
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Ovo je prva verzija vremenskog alata.
15:19
First time we ever tried it. We'll try to get it better later
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Prvi put da smo je uopšte testirali. Pokušaćemo kasnije da je poboljšamo,
15:21
but 12 months so far.
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ali za sada je pouzdana 12 meseci.
15:24
And, you know, I look at this,
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Znate, kad gledam ovo
15:28
and I get really emotional.
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zaista postajem veoma ganut.
15:30
You look at the patients, you can drill in all the controls,
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Procenjujete pacijente, možete iznova da proučavate sve kontrole,
15:32
you can look at them, you can ask them.
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možete da ih posmatrate, da ih pitate.
15:34
And I found a woman that had --
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Našao sam ženu koja je imala --
15:37
we found her, she was odd because she had data
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našli smo je, a bila je neobična jer je imala podatke
15:39
after she died.
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nakon smrti.
15:41
And her husband had come in and entered her last functional scores,
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Njen suprug se ulogovao i uneo njene poslednje funkcionalne bodove,
15:44
because he knew how much she cared.
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jer je znao koliko joj je stalo.
15:47
And I am thankful.
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Zahvalan sam na tome.
15:50
I can't believe that these people,
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Ne mogu da verujem da su mi ovi ljudi,
15:52
years after my brother had died,
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godinama nakon što je moj brat umro,
15:54
helped me answer the question about whether
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pomogli da odgovorim na pitanje o tome
15:56
an operation I did, and spent millions of dollars on
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da li je operacija koju je imao, na koju sam godinama ranije
15:59
years ago, worked or not.
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potrošio milione dolara, bila efikasna ili ne.
16:01
I wished it had been there
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Voleo bih da je ovo postojalo
16:03
when I'd done it the first time,
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kad je urađena prvi put
16:05
and I'm really excited that it's here now,
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i zaista sam uzbuđen što je to sada ovde,
16:07
because the lab that I founded
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jer laboratorija koju sam osnovao
16:12
has some data on a drug that might work,
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ima neke podatke o leku koji bi mogao da deluje,
16:14
and I'd like to show it.
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što bih hteo da izložim.
16:18
I'd like to show it in real time, now,
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Voleo bih da ga prikažem u stvarnom vremenu, sada,
16:20
and I want to do that for all of the diseases that we can do that for.
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želim isto da uradim i za druge bolesti kod kojih je moguće.
16:25
I've got to thank the 45,000 people
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Moram da se zahvalim ovim ljudima, njih 45 000
16:28
that are doing this social experiment with us.
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koji sa nama učestvuju u socijalnom eksperimentu.
16:31
There is an amazing journey we are going on
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To je neverovatno putovanje na koje smo krenuli
16:34
to become human again,
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da bi ponovo bili ljudi,
16:36
to be part of community again,
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da bi ponovo bili deo zajednice,
16:39
to share of ourselves, to be vulnerable,
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da bi dali deo sebe, da budemo ranjivi
16:41
and it's very exciting. So, thank you.
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a to je veoma uzbudljivo. Hvala.
16:44
(Applause)
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(Aplauz)
About this website

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